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Tuesday, November 1, 2011

When the stereotype is the research topic: Reflections on working on stigmatizing disease and clarifying critiques among the “last group of people it’s OK to make fun of”

“I was thinking about what you said yesterday,” the woman said to me, “and I have some feedback. I wish you’d have said some good things about Appalachia. Our sense of family, our perseverance through adversity, our generosity and care for community, our faith in God. I don’t know why everyone always focuses on the negative stuff. Why doesn’t anyone talk about the positives? My mother passed her knowledge of the land and handcrafts to me. I haven’t lived there for decades but I still remember that. I’m still proud of it. I don’t know why people don’t talk about that. Why you didn’t talk about that. Unless you didn’t see these things in your research in which case, of course, I understand.”

I listened to this woman, a collegial acquaintance who was in the audience I’d addressed at a statewide conference on oral health. I apologized to her. I thought that the narratives I’d shared had included some of the elements she’d mentioned, not because I was pandering but because the narratives represented my dissertation research on oral health disparities and access to dental care in far southwest Virginia: Janie, who had persistently tried to find dental care for her Medicaid-insured kids despite being continually refused. Dr. K, who gave free care to patients referred by his church’s ministry and his professional organization’s donated care network. While none of my participants had talked to me about gardening techniques or the traditional regional arts to which my colleague referred – topics that were, in fact, outside of my scope of research – I thought that these stories portrayed quite clearly themes of determination and faith, of family- and community-mindedness.

“Unless you didn’t see these things,” she had said. I certainly had observed attributes of what “local color” writers and residents alike call “Appalachian culture.” However, the goal of my talk – a plenary for clinicians, educators, policymakers, and funders – was to refocus the conversation from the easy target of individual behavior to structural and institutional contributors to the study population’s low access to dental care and poor oral health outcomes: The inequitable distribution of dentists in general, and pediatric dentists who took Medicaid in particular. Organized dentistry’s control over its “mid-level” professions, and the ways in which this lock suppresses pluralized options that might otherwise expand preventive care. The ways in which the individualizing and biomedicalized management of the region’s foremost syndemic – obesity and diabetes; chronic pain; and depression, anxiety, and dependence on substances from stimulants like tobacco and the dread Mountain Dew to prescription narcotics used for both somatic and somaticized pain – contributed to tooth decay, breakage, and loss. My audience may have been very applied, but my talk was grounded in colleagues’ recentadmonishments to wrest our critiques from their obscuring and alienating positions-on-high, and move them, intelligibly, into the public realm.

But my most-local-acquaintance’s comments left me afeared that, alas, unless I talked about prize-worthy-tomatoes or corn shuck dolls (or, God forbid, coal ), I would not have fulfilled my stated commitment as a sort-of-daughter of Appalachia, for my kin aren’t from there but that’s where I was raised: to not only document an issue of local interest and maybe try to help address it, but also to fight stereotypes about the region by maybe demonstrating that the issue hadn’t been such a problem after all…or, at least, there’s still good stuff to be found there despite the documented problems. So you might imagine how my greatest fears about my choice of dissertation topic, oral health problems among a poor, rural population in central Appalachia – that is, “toothlessness” among “hillbillies” – were encapsulated in that moment. That is, what if my very choice of topic and, even worse, my analysis of it, was perpetuating the very stereotypes that my data – and my politics – demand that I critique?

***

In my dissertation research, I investigate oral health disparities and access to dental care from the perspectives of patients, providers, stakeholders, and the people I have taken to calling, borrowing from contemporary political rhetoric, “discouraged patients” – people like Janie, who want and try to seek dental care for their families but are not successful – in far southwest Virginia. My choice of topic was informed by formative research in which I asked various community members what research topics would be most meaningful and useful to them. I know that some of my key informants advocated oral health so that I could deliver suggestions for a “culturally competent” social marketing campaign to convince locals to put down the chewing tobacco and pick up the floss [1]. But my commitment to interrogate, through ethnographic research, structural causes of poor oral health and low access to care hasn’t wavered, including when that commitment has demanded that I focus on the very institutions that these dear colleagues and collaborators, with whom I enjoy working and plan to continue doing so, represent. It’s not every professional group that invites a critically engaged medical anthropologist to say to its membership “your professional norms are part of the problem.” And then invites her back to say it again.

But what does this all have to do with Appalachia, the motivator of this essay? I posit that the topic of my meditation, that is, the stereotype as research topic, has a resonance that is, while somewhat universal, very very specific to the “last group of people it’s OK to make fun of” (c.f. Engelhardt 2005, Wray 2006) and, hence, an opportunity or some critical reflection on both research methods and analysis. What is it about poor, rural white people that makes it “OK” to make fun of, or malign or marginalize, their teeth? For one thing, like so many other stereotypes of Appalachians, we may not expect them to notice differences made visible out each time we smile or talk or laugh. For another, and this is as true about the more “positive” stereotypes of Appalachians, like “fiercely independent,” we don’t expect them to care. I have certainly heard this said by providers and other elites, including providers and elites who are from the region and, measuring their mouths by their own standards, do seem to care. They may academize their discussion, tracing local peoples’ “disinterest” in or deprioritization of good teeth to their British and Irish roots because, well, look at their teeth. But the assumption is always about patient disinterest and de-prioritization rather than an institutional dentistry’s disinterest or deprioritization that structures an inequitable distribution of care in the first place. The latter, and critiques of the former, are borne out in my data.

When I designed my interview questions, I included the question “How do your problems with your mouth, teeth, or gums affect your day-to-day life?” I expected patients to talk about changes they had to make in their eating, sleeping, working, and parenting habits to accommodate their dental problems. Instead, participants frequently entered into long and descriptive narratives of the stigma and alienation – sometimes self-imposed – that they experience as a result of oral health and the impression their mouths give people. Participants were self-reflective and specific; they said “I know what I look like,” listing traits including poor, uneducated, lazy, stupid, dirty, drug-addicted, unworthy of respect, and “hillbilly,” “redneck,” or “white trash.” They framed their experiences in terms of their own irresponsibility – their use of tobacco or methamphetamines, their poor brushing habits or love of sweets as children – but they also framed them in terms of the dental establishment, and its lack of provision – its lack of concern – for poor people, especially poor adults for whom the only Medicaid-covered benefit, in the state of Virginia, is emergency extraction. For those parents like Janie, who are highly motivated to get their children care to keep them from suffering the social consequences that they did, the situation in Virginia is, as Castañeda and colleagues have described it in Florida (Castañeda et al 2010), full of “false hope” – the promise of coverage, but the inability to find care. Even those people who do have jobs and private health insurance in the region, like so many in the U.S., have neither dental insurance nor the cash reserves to pay out of pocket.

***

I opened this essay with a fellow Appalachian’s critique of my work. She has re-energized me to think critically about representation. Representation of my study population. Representation of the region I call my childhood home. Representation of my own work. She urged me to emphasize the more “positive” aspects of “Appalachian culture” as they relate to oral health, if they came out in my research; to be fair, she also agreed not to argue too hard if the more “negative” traits, like chewing tobacco and drinking pop, emerged too. I’ve been thinking a lot about what she asked me to do.

We can talk about planting corn and hunting morels, making quilts and making do and all those other things by which some claim to know Appalachia and its people. My neighbors love to do some of those things. I love to do some of those things too. But the “positive” aspect I find most compelling in the face of crushing structural forces, whether that crush is deliberate or accidental or, as in the case of organized dentistry, probably some of both is participants’ narratives – their painful and bare self-reflection on having to live out one of the worst stereotypes they know daily, their honesty about their own behavioral contributions to their suffering, and their critique of a dental establishment that has failed them – and so, I continue to share them.

Sarah Raskin

[1] For an excellent summary of critiques of “cultural competence” in health and medicine see Carpenter-Song et al 2007.

4 comments:

Maureen Meyers
said...

I really enjoyed your essay, having done my dissertation research (archaeology) in southwestern Virginia. Very powerful, and I applaud not only your important work, but your ability to step back and reassess its value and importance.

It's the flip side of the coin of informant-worship, I suppose. You can never please everyone, and taking a step back to consider why and what that means in the context of fieldwork is a useful step back indeed. Thanks for this, from one almost-native daughter to another.

They can still be made fun of because people perceive them as potential opposition culture and voters in a polarised society. There's still a lot of NPR spillover in academic attitudes, even in disciplines where people have an awareness of the need for caution.

I heartily approve of your endeavor to have people at least have dentistry norms on the menu, rather than attributing everything to hillbilly norms.

Sarah: I'm planning to write on some parallel themes (though regarding the environment) and so I thought I'd come back to your piece to help stimulate ideas. One of the things that strikes me (and this is not a critique of your writing) is that the "positive" things we're supposed to talk about re: hillbillies are planting corn, hunting morels, making quilts, and family, and so we're still fitting them into something akin to "the savage slot," denying them coevalness, denying that they have anything positive to contribute about "modern" and "sophisticated" issues like oral health or environmental policy. Now, there are all sorts of problematic hierarchies within hierarchies here (e.g. why rank oral health above morels in order to complain that they're being placed in an inferior slot) but I think the question is still legitimate: can't the "good things" we say also (not instead) be about broader society and regimes of knowledge/power generally considered the realm only of certified experts (dentists, ecologists)?

In your case, I think that means celebrating their critical perspective about the problem of organized dentistry as part of "the good stuff." (Holy moley: structural violence? The natives are starting to speak like Paul Farmer!)

In short, if Appalachian people are belittled and delegitimized for being "bad" (dirty, unhealthy, stupid, poor), I think our efforts to make them "good" by recognizing only their traditional mountain skills might not help the situation any. It might put them in the same bind as the savage who became the bearer of traditional ecological knowledge: cute and interesting, but still unequal.